Meet the McNeil Family

Meet the McNeil Family

Tuesday, April 30, 2013

For Them

I just checked in on the kids before I turned in for the night. I lingered a bit longer tonight. Their futures are weighing heavily on me at the moment. It is easy to *forget*. To rush through the day and forget the fact they my children are slowly dying. I suppose in order to cope, we have to compartmentalize. In order to survive, we have to take it one day at a time. And then like a wave rushing over me, I remember. Their sweet little bodies are slowly failing them. Their brains are slowly being destroyed, causing them to forget and bring about confusion.

So often my sadness comes from a place of how this all effects me. How am I going to deal with losing them. How am I going to survive their deaths. All valid concerns. But I forget about the havoc Sanfilippo is having on them.

Tonight as I watched them sleep - Oliver on his belly with his legs tucked under and his bum in the air, Waverly on her back clutching her Cinderella doll - I was overwhelmed thinking about how Sanfilippo has effected them. The frustration of not being able to do something they once could. Not being able to find the word Wavey so desperately wanted to say. Stiff joints. Tripping and falling for no apparent reason. No best friends for sleep overs. No notes passed during class. No t-ball or soccer games. No dance recitals or school plays. 

My sweet babies.

I want so much more for them.

Monday, April 29, 2013

Go Nats!!!

We took the kids to a Nats game yesterday afternoon. We love cheering them on and the kids enjoy being at the ballpark. It is a great way to spend an afternoon. Waverly was content holding our hands and watching everything. Oliver loved the food (soft pretzels were his favorite treat). Unfortunately every time we go to a game, the Nats lose. We are not good luck for the team.

Missing Her Smile

Sweet Waverly has been having a rough few weeks. She has not been her usual happy self. She is crying more during the day, fussing at night, and not smiling nearly as much as she typically does. It is so difficult to watch. We started her on a new medication a few days ago that her pain management doctor suggested. Thus far, we have seen some mild improvements. I hope her smile returns and we can keep her pain free.

Wednesday, April 17, 2013

5 Years Later

Sweet boy. My Oliver. I took this photo the night he was diagnosed. 5 years ago today.

Waverly's diagnosis had come 1 month prior. In my heart, I knew the doctor would confirm Oliver also had this horrible syndrome. Matt, my parents and friends, were all sure he would be spared. My mom instinct knew. Waiting 4 weeks for confirmation was the most difficult time in my life. I was already reeling from Waverly's diagnosis. We had battled our insurance - and won - for the chance to take the kids to Duke to see specialists about a HSCT. We immersed ourselves in learning all we could about Sanfilippo Syndrome. I spent hours on the phone with other families. Hours online reading family blogs. As much as I *knew* Oliver had it, the confirmation was devastating.

My cell phone rang as I was walking with the kids in central London. We were on Oxford Street. I had just picked Waverly up from preschool and we were enjoying a nice walk. My cell rang. I carried it in my hand volume on high, anticipating Amy's (our neurologist at CHoP) call. From her first word, I knew she was delivering bad news. If the test was negative, she would have been laughing and screaming in celebration. She was sober and straightforward. I dropped to my knees and cried on the corner of Oxford and Audley.

I remember calling Matt at the embassy. He also had his cell with him at all times, convinced I would be calling him with good news. I was just a few blocks from him, he was on his way. He got up from his desk, went to his boss and she knew we had received bad news. I remember hugging him, climbing into a taxi to head home. We both cried and stared at Oliver, riding comfortably in the bottom of the Phil & Ted's buggy.


Now, here we are 5 years later. Still two beautifully happy kids by our side. We have survived 5 years of living with this dreadful disease. We have committed ourselves to creating memories, to enjoying each day we have with the kids. We may not look like many other families and our lives are certainly different. It has not been an easy journey. We have been grieving for 5 years, anticipating the greatest loss a person can experience. Twice.

I would give everything to make Waverly & Oliver healthy - to free them from Sanfilippo.

Judge Waverly

We went to Ohio last week to visit Matt's family. We took the kids to a children's museum in Dayton and Matt snapped this picture of Waverly is the play courtroom. Judge Waverly presiding!!

Monday, April 1, 2013

An Uncomfortable Subject

 I have written about poop in the past. Unfortunately one of the symptoms of Sanfilippo is diarrhea. We have had some incredible messes on our hands in the past. Quite literally. We have left poo covered clothes in rest areas, amusement parks, along the sides of roads, the National Mall, restaurants, birthday parties, parking lots. (I am fairly confident people tell stories of our family at the National Book Festival a number of years ago. Matt was carrying Wavey on his shoulders when the unimaginable happened. I chastised the people behind them in line to meet Elmo. How can you not tell someone there is poo dripping down their back?!?!) We always carried spare spare clothes, strollers and car seats were covered with water proof liners and towels. (Nothing worse then a poo covered car seat in the middle of no where on a long drive.) The threat of a major blow out has kept us from going places and caused us to leave early. Poop has controlled us.

Then a reprieve. Both kids seemed to be in a GI holding pattern. No major issues. Everything felt controllable.

Until now.

Constipation has reared its ugly head. Moms of  older children with Sanfilippo told me that constipation was worse. I didn't believe them. I do now. My poor sweet Wavey is struggling. This is very common for our kids as they get older. Their little systems begin to slow down and unfortunately the GI tract not exempt.

Diarrhea was a mess, but it caused no pain. The same cannot be said for constipation.